Implications for Practice

The intersectioning of the potential five –way dynamic shown in the model would seem to be pivotal with the mother’s experience of the relationship determined by a combination of the influences of society, the professional, the system, the child and how she herself feels – often unique in that one point in time and certainly changing through the child’s life (4.1). Thus, perhaps a financially constrained system producing new criteria that the professional must apply, denies the child support which causes the mother, depending on how experienced or strong she feels, to challenge or resentfully accept, both of which may fracture what had been a

satisfactory relationship. The question for practitioners is how we manage such processes at the interface between them – that is our relationship with the mother.

The interpretation of the research findings has leant heavily on a Bordieusian social capital model. It suggests that much of the mothers’ experience of professional relationships is grounded in the power and system differentials arising from social capital and in their attempts to resist it. This being the case it would seem that efforts to improve their experience should be targeted at reducing the divisive nature of such dynamics. A number of suggestions for ways to do this emerge from the mothers’ comments.

4.7.1 BEING OPEN

One example identified on a number of occasions is the mothers’ desire for honesty (1.1). They believe practitioners hide the truth, while they feel they can cope with it, and identify avoiding it as wearisome and problematic (1.2). They believe they would have more realistic expectations and conflict would be reduced if they knew nothing was being disguised, hidden or withheld (2.2.3). The relationship then may benefit from practitioners being able to acknowledge the severity and permanency of a condition, admit their lack of understanding and willingly disclose system constraints and fractures. Honesty that reveals limitations may cause the mother initial anxiety, but voicing challenges and worries could be seen as a natural part of the process to assimilate the new information. If this is the case, the mothers’ experience of professionals responding negatively to criticism (3.4.2) raises some concerns about the consequences of them being transparent. Professional understanding of the stress response and ways to deal with conflict may go some way to reducing these kind of interpersonal difficulties.

A further related revelation was the notion that the mother becomes something other than mother because displaying ‘parent like’ qualities leaves them undervalued and vulnerable. Previously, the discussion illuminated how the person of the mother may be lost in the process. It seems fair to say a mother pretending to be unaffected is unlikely to generate robust, lasting lines of communication. Perhaps it is important

that practitioners understand that while anger and apprehension are natural emotional responses to stressful events, they do not represent incapacity or helplessness and, further, could be the result of difficulties dealing with the demands of professional support itself.

It would seem that open and honest dialogue is best facilitated in a relationship where the mother is seen as a co partner and where her expertise, albeit a maternal instinct as some suggest, (3.1) is recognised and valued. This is not to say that the professional should forget that the mother is a mother first and will have the emotional bond, caring and concern for her child that they, as a professional, will not feel. So the ‘expert’ will be required to give the relevant information in a sensitive and facilitative manner and to explain when information is not shared more fully (1.2).

4.7.2 INTERPERSONAL CONNECTIVITY

One way to ensure the professional gets sharing right is a solid personal connection between the two. This is not always easy in times of reduced staffing and waiting list pressures. However, the mothers challenge against professionals in ‘ivory towers’ (2.2.2) suggests they seek greater connectivity. The key worker role (Limberick, 2004) allows the mother to be connected to someone who may not be the decision maker but who knows the family and local services, thus acting as a bridge between the family and professionals who are somewhat removed from them.

A strong thread through the mothers’ experience of connectivity was the professionals’ attitude to the child (1.4). Accepting the relationship concerns the mother and the child, and acknowledging and openly valuing a much loved child, will show genuine connection and reduce the temptation to view the situation through a depersonalised academic lens (1.4).

4.7.3 ACCEPTING THE MOTHER’S ROLE

Being aware of the function of the mother’s role and negotiations as purposeful and built on her maternal expertise could reduce potential power struggles within

challenge process. Professionals could direct mothers to the various schemes such as Patient and Advice Liaison Service (PALS), Service User Involvement Schemes and Patient Forums designed to allow voice to those in receipt of services. Some of the mothers in the study already engage with professionals outside the context of the relationship (4.2.4). Encouraging practitioners to get involved with support groups and networks may prove useful in reducing personal barriers, illuminating misrepresentations and providing useful information and shared resources.

A further way in which practitioners could reinforce the mother’s role is to pursue stakeholder led research (Goodman, 2004). This would help draw mothers and professionals into a more ubiquitous relationship, where shared goals and barriers were exemplified and addressed. Larger systems-level change could be driven by the evidence from such collaborations.

4.7.4 THE SYSTEM

Although Fiona asserts that particular professionals get pleasure from the distress their power and control creates (2.3.2), it seems unlikely that many would enjoy hearing that mothers feel sick before they meet and like chastised children, cattle or a number when they do (2.1, 2.2.2). However, the routine customs and approaches that generate such upset, for example, not being seen by the same practitioner, the time limited appointment or a hierarchy that delays the sharing of information, may be difficult for the practitioner to change on their own. Further, professionals’ may become immune to how their practice is often fashioned and constrained by their involvement in particular systems. Yet, in order to realise change, practitioners must hear and relate mothers’ feelings to those with responsibility. The model produced in this research might prove useful in such a process.

4.7.4.1 CLIENT CENTRED PROCESSES

The mothers’ difficulty with access to practitioners, their information and their services are most often understood as representing professional power and the mothers’ respective disempowerment (2.2.3). This is perceived as a lack of empathy

or concern (1.3), generates conflict (3.1) and results in the mothers using stealth practices they do not sit comfortably with (3.3.4). It would seem easier access might significantly improve the relationship. Innovations such as single point of access, key workers, book and choose appointment schemes, open consultation time and use of modern technology and social media could all be utilised to improve practitioner availability. Information sharing could be improved by replacing the routine copying of medicalised or academic correspondence with more user friendly versions, suitably prepared information and signposting in leaflets or websites. Practitioner assisted support networks and educational groups could build lines of communication and family self sufficiency.

4.7.4.2 TRAINING

Perhaps one of the greatest issues for these participants is the lack of understanding and empathy shown by practitioners. Improvements may come from, for example, a broader training for medically based disciplines; one that harnesses the alliance and capability models (Brett, 2002; Mitre, 2006). The introduction highlighted the social expectations that medics cure (Kirk, 2001), and many of the women recognised practitioner discomfort with their child (1.4). A professional grounding that asserts helping is not always equated to repair would go some way to alleviate the pressure on practitioners and their difficulties dealing with those whose condition they cannot remedy. It would be hoped that this kind of meaning making would generate greater positivity and empathy within the relationship; something the mothers identify as missing on many occasions.

A further concern is that the mothers believed professionals did not understand the social and personal implications of having a disabled child. It could be that some degree of real life experience, perhaps in community placement, and teaching of models such as McCubbin and Patterson (1983), would highlight the complexities of positive as well as negative connotations of the situation.

4.7.4.3 SUPPORT SYSTEMS

The discussion has explored the women’s understanding that professionals protect themselves by developing an emotional distance from them and their child (1.2). While changes in training mentioned above should help eradicate such threat, the ‘system’ surrounding practitioners needs to provide supervision that offers somewhere to explore feelings as well as managerial issues. In service, professional development could also enhance personal stress management, coping skills and build resilience.

It also seems that systems can cause the professional difficulties which permeate and corrupt the relationship (2.3.3). In a way similar to how mothers experience collaborative relationships, the system could reduce potential flash points by supplanting performance indicators, such as caseloads and contacts, with processes that offer shared case management, accommodate practitioner judgment and provide clear commissioning guideline. Practitioners who are supported and empowered may reduce conflict and express a greater degree of empathy as they will be required to protect themselves and the system less often.

4.7.4.4 SOCIETY

The analysis, model and discussion illuminate dominant discourses on disability, mothering and expertise as having a major impact in the shaping of the women’s experience. To a great extent then, the women’s struggle is against a powerful socially constructed narrative and can be viewed in terms of a social injustice. The difficulties in contesting such social constructs and challenging power givens have already been discussed, however, the study shows that mothers do dispute such understandings in ways with much in common with the social justice approach (Morris, 2011).

Any sea change will necessitate the recognition of power imbalances at all levels and the offloading of socially bestowed attributes and authority. The mothers’ approach and activities could provide a working model for practitioners keen to fashion changes to the experiences illuminated in this research. For example, professionals involved in

Comment [B4]: I know what you mean

(linked to the phrase to do with changing tides, right??), but not sure it sounds right

facilitative relationships with mothers would be charged to disseminate their good practice and inclusive philosophy. They could contribute to the multi-disciplinary process, volunteering as lead professional in case management and engaging in the training and development of others. Taking their approach away from the realms of the relationship and into support networks, the media and being published would broaden the scope of influence. It might also be useful to engage with commissioners in order to advocate for changes in the nature of service delivery and to be involved with the scoping and review exercises of the relevant government department in order to highlight issues and influence change.